No two cases of ALS are the same, nor are any two ALS caregiver experiences. While there is no one-size-fits-all answer to every caregiver question, there is often much to be learned from people who are, or who have been, a caregiver for someone with ALS. As National Family Caregivers Month comes to a close, we wanted to take a moment to highlight some of the advice, resources, and support available for ALS caregivers all year long.
When Tony got diagnosed with ALS, he and his wife Karen turned to each other to figure out their path forward, and they found they were better when they could face it together. The role of ALS caregiver wasn’t what Karen had planned, but together with Tony and their family, they set about figuring out this “new normal.”
For someone facing the challenge of becoming an ALS caregiver, there are many paths to gaining the knowledge and experiences they need to care for someone with the disease. Finding accurate and timely information can play a key role in equipping those impacted by an ALS diagnosis with the skills they need to provide the best possible quality care.
Over the past years we’ve had many conversations and interviews with ALS caregivers, and while no two experiences are ever alike, there are often similarities and storylines throughout. In recognition of National Family Caregivers Month, we thought we would share some of these caregiver stories and advice we’ve collected along the way.
For National Family Caregivers Month, we are featuring David and Laura DuBois. David is living with ALS, and his wife Laura is his primary caregiver. As simple as it might sound, their conscious decision to truly LIVE with ALS is what has allowed them to face each challenge and each day, together.
November 1 marks the beginning of National Family Caregivers Month. There are many ways to help caregivers and families impacted by ALS. The ALS Association put together a list of ten ways to make a difference in the lives of family caregivers.
We recently launched Nationwide Connect, monthly online support groups for both male and female ALS caregivers designed with one thing in mind—enhancing quality of life and supporting families impacted by ALS regardless of where they live. They follow support group best practices and join people together who are dealing with similar experiences.
Medicare open enrollment begins Sunday, October 15, the annual period when individuals may add, drop, or make changes to their health insurance coverage, with selections remaining in effect for the next full year. After the open enrollment window closes on December 7, plan changes can only be made after a qualifying life event.
ALS is a very different disease. Therefore physical therapy treatment has to be different than what you would consider typical physical therapy. You can't fight it off or beat it with exercising. In fact, the wrong kind of exercising can actually make things worse.
Dr. Tawfiq Al-Lahham is a neurologist with a subspeciality in neuromuscular medicine. We discuss with Dr. Al-Lahham how expanding multidisciplinary care is helping to make ALS a livable disease for everyone, everywhere until a cure is found.
This week is Malnutrition Awareness Week, an opportunity to remind everyone of the role proper nutrition plays in a person’s health and the importance of early detection, intervention and treatment of malnutrition for people living with ALS and their caregivers.
The ALS Association sent formal responses to Blue Cross Blue Shield of Illinois, New Mexico, Texas, Oklahoma, and Montana challenging their draft policies regarding coverage of Qalsody, approved by the FDA earlier this year for treatment of people living with ALS caused by the SOD1 gene mutation.
Melissa Enfinger, a care services director for The ALS Association based in Alabama, knows the importance of mental health when dealing with ALS. Melissa recently joined us on a Connecting ALS podcast episode to help us better understand the role wellness plays in making ALS livable and improving a person’s quality of life and share information about a mental health networking program she is spearheading to help the ALS community.
Focusing on caring for a person’s overall wellness is an important part of ALS multidisciplinary care. For people living with ALS and their families, the disease impacts every aspect of life, not just physical wellness, but also emotional, spiritual, social and financial wellness too.
For people living with ALS and their families, working with health insurance providers at all stages of the disease is a necessity to obtain the critical care and services they need. The ALS Association, local ALS care teams, and ALS multidisciplinary clinics can all be helpful in getting access to the care and equipment needed for people with ALS to live their lives as they choose.
The ALS Association has launched My ALS Journey™, a new interactive, web-based tool that allows people living with ALS to take control of their journey with the disease. Developed in consultation with the ALS community, My ALS Journey is designed to put individuals living with ALS in the driver’s seat of their own health care journey.
Gayle Jacobs’ journey with ALS started in 2017 when she was diagnosed at the age of 44. An optimistic and positive person by nature, she realized what an incredible network of support she had surrounding her with her family and friends, and she quickly set her sights on how she wanted to live her life with ALS.